Boca Raton couple with disabled son become outspoken advocates for disabled
By Angel Streeter
January 16, 2004
boca raton· The brown-haired, 3-year-old in the wheelchair is hard to miss. At stores and malls and on airplanes, people quickly recognize Adam Susser.
After all, People magazine last summer documented how he's blind and suffers from quadriplegic cerebral palsy in a six-page spread about medical mistakes.
He appeared with his parents, Gary, a Boynton Beach attorney, and Judy Susser on the Montel Williams Show in September, The Oprah Winfrey Show in October and taped a segment on The John Walsh Show last month.
A foundation bears his name. He inspired statutes in Florida's controversial medical malpractice law.
All of it comes from the desire of his parents to attach something positive to Adam's life and prevent what happened to him from happening to other children.
"His loss has to stand for something," said Gary Susser, 50.
The once private couple have become outspoken advocates for people with disabilities and patients' rights. Gary describes himself as a rabble-rouser. Judy surrendered her privacy. Both push for a son who can't feed himself, walk, sit up, talk or use his hands.
They are roles neither saw themselves taking on.
The couple, married for seven years, turned to in vitro fertilization in November 1999 to have children. Judy immediately became pregnant with twins.
"My wife had a picture-perfect pregnancy," Gary said. "She did everything by the book."
But 34 weeks into Judy's pregnancy, her water broke three weeks early. The couple rushed to the hospital, and Judy requested -- and was denied -- a caesarean section, the Sussers said.
Four days later, Judy delivered the twins by natural childbirth. Both boys, Brandon and Adam, spent two weeks in neonatal intensive care.
"They never told us anything was wrong with Adam," Judy Susser said. "I took them home and thought everything was fine."
It wasn't. Adam was starved of oxygen and suffered severe brain damage, the Sussers say.
In a lawsuit they filed against Coral Springs Medical Center and Judy's physicians in February 2002, the Sussers said the obstetricians should have recognized Adam's problems and delivered the babies days earlier.
While basking in the joy new babies bring, the Sussers had to come to terms with having a child with special needs. The home office Gary set up for Judy, a paralegal, was abandoned. Most of her time would be devoted to Adam now. They lined up therapists.
The couple searched for live-in help. Then there was the guilt, the shame, the stares of strangers. Most of all, there was anger.
Anger propelled the Sussers to join others in opposing caps in Florida on pain and suffering awards in medical malpractice lawsuits.
In the midst of their suit, the Sussers became activists, joining Floridians for Patient Protection and attending rallies and counter demonstrations. They testified at Florida House and Senate committees.
They met privately with state representatives and senators, pleading with them not to pass legislation that would limit non-economic damage awards to $250,000, Judy said.
The awards are now capped at $500,000 and up to $1 million for catastrophic injuries such as blindness and severe brain damage.
"They're taking a painful situation and turning it, hopefully, into a triumph in improving medical care," said Jacqueline Imbertson, president of Floridians for Patient Protection.
That small victory and the settlement of their lawsuit in June for an undisclosed amount didn't end their focus on improving patients' rights. The Sussers favor providing patient advocates for people who are hospitalized and having doctors who repeatedly commit malpractice lose their license to practice medicine. They believe patients should be skeptical when it comes to their doctors' advice.
"There should not be another child harmed in this manner," Gary said. "People should not be afraid to question their doctors."
In May, Gary became a member of the Boca Raton Advisory Board for the Physically and Mentally Challenged.
The Sussers also began the Adam Susser Foundation in June to fund the creation of special-education programs, to provide scholarships for college students studying to become therapists or special education teachers, and to help create clinics that provide therapy and medical services for disabled people.
"There aren't enough schools for kids like Adam," Judy said. "If there are, it's up to age 10. What's going to happen to him after 10 years? These things worry me."
Adam attends Sunrise Park Elementary School in Boca Raton, where he receives limited physical, occupational and speech therapy in a unique program the school recently began offering. The Sussers pay for additional therapy elsewhere, including visual, aquatics and hippo (horseback riding) therapy.
They realize that many parents don't have the money to pay for those extras or simply don't know what resources are available for their children. They want to change that.
"It's like you're driven," Judy said. "I'm doing it for Adam because he can't do it for himself."
Angel Streeter can be reached at email@example.com or 561-243-6643.
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